Q24.9
Conditions
Interventions
Group 1: Subprojekt A:
Long-term follow-up of children, adolescents and young adults after mechanical circulatory support - recognizing late effects
In this health services research, the primary targ
Sponsors
Abteilung für Angeborene Herzfehler und Pädiatrische Kardiologie am Universitäts-Herzzentrum Freiburg
Eligibility
Sex/Gender
All
Age
2 Years to 25 Years
Inclusion criteria
Inclusion criteria: Subproject A: Patients: Living patients Treatment period: 2000-2024 Treatment location: Clinic for Congenital Heart Defects and Pediatric Cardiology, University Heart Center Freiburg/Bad Krozingen (University Medical Center Freiburg) Cause of treatment: Heart failure Type of treatment: Mechanical circulatory support (Extracorporeal Life Support System = ECLS) Declaration of consent by the patient and/or parents/legal representatives. Subproject B: Living patients Treatment period: 2014-2017 Special feature: Have already been included and examined in the study/preliminary investigation “Influence of rewarming rate during cardiac surgery in deep hypothermia of infants with AHF” (application no. EK-Freiburg 452/14). Declaration of consent by the patient and/or the parents/legal representatives.
Exclusion criteria
Exclusion criteria: Subproject A: Patients: Deceased patients Diseases: Pre-existing neurological abnormalities, seizure disorders, patients with chromosomal aberrations. Lack of informed consent Subproject B: Deceased patients Missing declaration of consent Patients with chromosomal aberrations
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Assessment of needs for extended aftercare of this patient clientel with special attention to: neurocognitive Outcome, health-related Quaility of Life, health-related special support requirements and burden of the familiy | — |
Secondary
| Measure | Time frame |
|---|---|
| Subprojekt A: -Can differences between “self-reported” and “parent-reported” be detected during data collection in the corresponding age group of the questionnaire survey? -Is there a correlation between the duration of mechanical circulatory replacement or serious complications (bleeding event or thrombosis) during treatment and health-related quality of life, future health care needs or family stress experience? -Does a reduced health-related quality of life and/or an increased health-related need for support cause an increased family experience of stress? -Is there an era difference for patients treated between 2000-2012 or between 2012-2024? -Is it possible to determine a temporal progression with the occurrence of support needs or the family experience of stress? Subprojekt B: - In the cohort under review, individual patients had abnormalities in neurological monitoring during surgery and in the postoperative course and further follow-up interventions in the form of surgery or cardiac catheterization. What is the neurocognitive outcome of these patients compared to the patient group without detectable abnormalities in extended neurological monitoring and <3 or =3 follow-up treatments? -Can differences between “self-reported” and “parent-reported” be detected during data collection in the corresponding age group of the questionnaire survey? Is there a correlation between health-related quality of life, a need for health support and an increased family stress experience? | — |
Countries
Germany
Contacts
Public ContactRouven Kubicki
Abteilung für Angeborene Herzfehler und Pädiatrische Kardiologie am Universitäts-Herzzentrum Freiburg
Outcome results
None listed